2 Years Ago

It was 2 years ago we got our little one ready for her surgery.

 And she was returned to us after surgery, seemingly content and happy.

It's hard to imagine it has been 2 years since she had surgery.  Since surgery we have been on the all day everyday patching plan.  Generally we aim to have her patch on as much as possible, everyday, and usually that means she's getting about an hour without her patch a day.  It has been 2 years of us parenting a child that wears a patch.

When a surgeon sits down with you before the surgery date is set, and he or she says to you - surgery is difficult but it's after surgery with the patching that is the hard part - they couldn't be more right.  Surgery was hard, and felt devastating at the time, but there was an end to the surgery, she was returned to us, and it was over.  Patching - it's never over.

Patching is a struggle and presence in our life everyday.  As M gets older she is starting to realize it sucks to have to wear a patch.  She realizes how much she can't see when she has to wear her patch and she has become very good at verbalizing her annoyances with it. She has come up with some masterful ways in which to convince you that you need to take her contact out and therefore have to take her patch off...  She knows all the contact and patching language, and has become quite accustomed to the 5-6 week check ups at the hospital.

She has worn her patch everywhere.  We insist she wears her patch everyday.  I find it easier to just keep her wearing her patch as much as possible, with little exceptions as possible, so she knows its a part of her life everyday all day, almost regardless of what we are doing.

She learned to crawl and walk with her patch.

She learned to drive a tractor.

Taught everyone we saw all about patches and cataracts.

Learned to play in water and swim (without losing a contact or patch!).

Went on vacations at beaches (yes that's a beach of sand - worst nightmare mixing children with contacts and sand!).

Drive crazy shopping carts with her brother.

In two years she has learned a lot and done a lot, and she has managed to do it all with a patch.  She knows she wears a patch, and she knows why, she also knows that she is the only person she knows that wears one.  She knows she looks a little different from her friends now, and she knows that when she wears her patch she can't see very much at all.  She knows she misses lots in the world around her because she can't see, but she has learned to fake it!   She knows that sand and dirt make her contact hurt her, and she has learned that getting squirted with orange in her contact eye really hurts her too.

I know that in the future she will know and understand that we did all this surgery, and subsequent patching for her, and the possibility of the best possible vision outcome in that eye.  In the end, it'll be worth it, all this hard work, all the fights and struggles, and all the times she notices she's a little different.  In the end we will be able to say we did the best we could, and she did the best she could, and we can deal with whatever comes after that.

M's Last Appointment

M turned 2!

On her birthday she had an eye appointment - what a way to celebrate!  As soon as we walked into the office she was very excitedly greeted by the receptionist with a big 'Happy Birthday'.  And in response she buried her head in my shoulder.  The whole day when someone gave her a birthday greeting she responded 'no happy birthday'.

Then when she got called in for her appointment she was again greeted with another enthusiastic birthday greeting to which she buried her head again and said 'no happy birthday'.

The 'terrible twos' hit hard this day.  She was so uncooperative at this appointment, refusing to identify any images close up or far away.  She wouldn't talk to the lady doing the check up, and couldn't even be bribed with stickers.  In the end she identified an image maybe four times, after a 30 minute struggle to get her to cooperate.  The thought is there has been improvement, the limited images she identified were from a slightly farther distance and that was with little to no cooperation.



M is still full-time patching and wearing her contact.

Her next appointment is in another 5 weeks at the end of March with her surgeon again, and hopefully she's over the 'terrible twos' by then!

Blog Neglect

I have been neglecting this space!  I attempted to write a "1 year" post, that being 1 year after M's surgery date, but it was hard to write.  I've had a partially completed post waiting to be written, and just felt I couldn't write another post if I didn't write that year post.  So for whatever reason, it's hard to write, it's hard to sum up a year of appointments, feelings, and events.  So I give up!  And I'll just move on!

M's congenital cataract surgery was November 23, 2012 and I think I may remember that date for the rest of my life.

I find it kind of sad to look back at how much we struggled just after surgery, how when we first were able to get a contact in and patch her, she was essentially blind and couldn't be put down or left alone.

I look back a year ago, and we have learned so much, dealt with so much, and persevered so much.  There have been ups and downs in the process following her surgery, but considering everything, she has been remarkably good with her patching.

M has been seeing her optometrist and surgeon every 5-6 weeks, and her next appointment is this Friday.

Eye Chart and New Contact

M had an appointment recently and she managed to identify 4 out of the 9 pictures.  She identifies the duck, tractor, house, and puppy (really a teddy bear).  This gets her onto the chart, and gives staff a baseline for her vision numbers.

At our last visit M's eye had changed shaped considerably, and there was concern it could be because of glaucoma development.  She had her eye dialated, and closely examined (she sat motionless for probably 20 minutes) with numerous lights, and tools.  Turns out her eye had physically grown, nothing as a result of glaucoma, and therefore needed a new contact.  The new contact we have is a stronger magnification at this point, and suits her eye shape at this time better than the old one had.

Since she has been wearing this new contact she has appeared more engaged with 'seeing'.  She has been colouring with her eye super close the paper, reading and looking at books up close, and looking at people closely.  They seem happy with this, she's engaging in her vision more with this new contact (like she had with the other contact months ago) and hopefully keeping her brain busy at developing better vision!

Matching Patches

M has been a bit of a pain with her patch for the past few weeks.  Most days she uses about 4 patches, and can get the number into the double digits some days.  She has had a cold, and is working on getting 2 teeth, which I hope is the reason for this sudden onslaught of patch assaults.

To encourage more patch wearing, I have been offering M the opportunity to put patches on her favourite (could be only as well) doll.  This is a series of pictures just after they both got their matching patches on.

Hailey got her patch on just like M.

 M is admiring how her and Hailey's patches match!

 Hailey gets a big kiss from M for being such a good girl with her patch on.

Hailey also gets a great big hug for being such a good girl with her patch!

And finally M gets to take Hailey's patch off because she's been such a good girl!

Hope I'm Not Jinxing It...

M has been using this same custom contact since the beginning of August!  It really seems like it has been a contact that we have had forever, and for whatever reason it has had very few issues.  It has only wrinkled or rolled in her eye I'd guess less than 5 times in these past 2 months!  Which is amazing!

We went on a vacation for the first 2 weeks of August and (of course!) took a spare contact with us.  I really didn't think we would make it through a vacation without losing one.  And it got lost, somewhere in France.  I knew that we needed a spare, because if we had her on vacation, and lost the contact and didn't have a replacement, it would have kind of ruined our trip.  I would have been worried and festering over her not wearing her contact, and not being able to clock patching time.

I included these 2 pictures, because you can really notice the contact she's wearing.  It's a strong magnification (+20 I think...) so her vision is clear within the first few feet of herself.  Her contacts so far have a slight tendency to ride a little low, but usually fixes itself to the perfect position after a blink or two.

Funny Little Images

M had an appointment about 2 weeks ago at her surgeon's office, and with her optometrist.  It's taken me a while to write a post about it, well because it was just another normal appointment.  Things looks maybe better or the same, at least not worse, and keep patching full days everyday.  It's hard to remember that going and having a non-eventful appointment is good news.  Things just keep on going, and we keep patching, and hope for the best in the end of all this.  

One very exciting moment was the mention of this eye chart.  They gave me a copy of the images they use to get her 'on the chart', for a more objective way to measure her vision development. 

She's 1.5 years old, and they suggested a little young usually for being expected to identify or recognize these images, but she was so chatty and interactive at her appointment they suggested I start familiarizing her with the images.  If M and I can sit in the big chair, and they flash these pictures up on the screen, and if she can somehow communicate to me the image that she is seeing!  Well, I would cry.  I'd be that crazy crying lady, who is sitting in a chair with her 1.5 year old, crying because she said 'tractor' when/if she could see that jeep looking thing.  And just to be open about the whole thing - I've only cried in that office once!  After they had done all her exams, and the surgeon met with us to tell us she had the cataract and we needed to start planning her surgery date.  Sure I've cried lots of other places throughout this whole thing, but only once in that office!   

So we've had these images for about 2 weeks and I have yet to get M practicing them...  Our last 2 weeks have been occupied with me going back to work, E starting school for the first time, and M starting daycare.  So we've been busy.  Plus I have to get the images made into fun little cards, magnets for my fridge, and figure out the signs I'll teach her to go along with each image - cause these days most words sound like tractor!

A rotary phone?!  Hilarious image to use right?!